'Something's not right with Mom . . . and now, Dad.'

Watching one parent die by inches is painful enough. When Alzheimer's takes both, your pain is more than the sum of the parts.

January 13, 2008|By Melissa Isaacson and Melissa Isaacson covers sports for the Tribune

I'm not sure if I buy that, but I do know as I walk through the dining room, past the woman in the corner spewing nastiness at anyone who crosses her path; to the woman cradling a baby doll; as I listen to the man in his room shouting, "Help me!" and to the woman in the hall yelling, "Yoo-hoo," I am somehow glad my mother is the quiet one. And I know that, more than anything, that's the real reason the nurses like her.

Out of all the nurses we have come to know, it is a night nurse we do not who is holding our mother's hand when she dies. She tells us it was peaceful. I choose to believe her.

A bleeding ulcer and fever had weakened her in the final two weeks, and we knew the end was near. But I am still shocked. It is Aug. 14, 2007. My mother was 81 years old. And I never did tell her it was OK to go.

Months later, I panic a bit at the thought that my siblings and I are the caretakers of our family memories, memories that are so precious and yet so elusive that they evaporated from our parents' minds seemingly overnight. I wonder if I will forget. And then I close my eyes and I can still hear my father's voice. I know exactly what my mother would say. They can still make me laugh. And that will be enough.

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Behind the mask: Fear that it will happen to you too.

I am driving down a familiar street on my way to a familiar sushi restaurant in the neighborhood where I have lived for the last 14 years. I stop at the light and suddenly cannot remember which way to turn. Really can't remember which corner the restaurant is on. And it scares me.

I suppose if I can remember these things happening, then I am fine. But then that would be long-term memory, not short-term, wouldn't it?

"No, I mean really couldn't find it, and couldn't even remember if I had driven it," she says. "I called the police, even."

"Oh," I reply, mumbling, "that happened to me once."

"Oh, yeah," she adds for emphasis, "I also wore my shirt backward one day last week."

"That's not Alzheimer's," I tell her, "that's just embarrassing."

My sister and two brothers and I are reasonably sure at least one of us will contract the disease that plagued our parents the last two decades of their lives. And because humor is as much a characteristic in our family as blue eyes, we joke about it since there isn't anything else to do.

Currently, explains Dr. David Bennett, the director of Rush Alzheimer's Disease Center, there is no definitive screen for the disease other than using a battery of cognitive exams to document memory loss. And while scientists continue to experiment with various genetic and blood tests to predict who will develop Alzheimers, "most people in the field don't advocate people taking these tests outside of studies right now, so the real use for them will be when they're tied to some sort of intervention," he says.

Most people Bennett sees, like my siblings and I--those in their 40s and 50s whose parents have or had the disease--come in after living in fear for months and even years that they have Alzheimer's, he says, only to be tested and found they do not. But it is still better to be tested. "Worrying is bad for your brain," says Bennett. "That feeling of being stressed actually increases your risk of Alzheimer's disease."

I communicate this to my brother Barry. "Great," he says, "we're doomed for sure."

Since my parents were relatively young--late 50s, early 60s--when they first exhibited symptoms, our chances of developing the illness are higher than average. But everyone's risk increases as they age.

Of more constructive concern is the need for research funding and people to participate in studies, says Bennett, adding that President Bush was the first to cut funding for Alzheimer's since 1970.

The total National Institute of Health research budget for Alzheimer's is $650 million and the current estimated cost to the economy of the disease is about $148 billion per year and growing rapidly. "So you do the math," says Bennett.

Although there are currently 4.5 to 5 million Americans who have Alzheimer's and aging Baby Boomers will soon make it an epidemic, it is simply not on the national agenda. "I don't want to take anything away from cancer or heart disease to give to Alzheimer's," Bennett says, "but the heart, lung and cancer institutes are four times the size of the aging institute and Alzheimer's will soon be the most costly disease in the U.S.

"Unfortunately, with this disease, the outcry is not from people who have it. Breast cancer and AIDS patients have huge advocacy groups. People with Alzheimer's are sitting in the corner."